CCG Terms of Reference

Cancer Campaigning Group Terms of Reference - January 2018

The Cancer Campaigning Group (CCG) is a coalition of charities working for improvements in outcomes, treatment and care of cancer in England. We are a diverse group of organisations with different areas of focus, including service delivery, research, prevention, information and support, care and treatment, and patient involvement. Together, we speak with one unified voice with the aim of influencing cancer policy in England.

Remit and objectives

  1. Working with its members, supporters and other external organisations, the CCG aims to enhance and add value to the debate and ongoing campaigning for change in cancer policy.
  2. The CCG will set its own objectives, which can include any aspect of cancer policy, including but not limited to, prevention, research, early diagnosis, primary care, secondary care, access to treatments, living with and beyond cancer, metastatic cancer, and end of life care.


The CCG is run by its members for its members. While the CCG is supported by funds from the pharmaceutical industry, it remains wholly independent in its capacity to set and pursue its own agenda. The final decision-making responsibility lies with the Steering Group, as authorised by the membership.  However, at appropriate times and when the need arises, the CCG may choose to work with any other body, including the pharmaceutical industry in order to achieve its agreed aims.

CCG Structure

  1. The CCG’s Steering Group is made up of 6 members.
  2. The CCG is supported by an independent secretariat. The secretariat is currently provided by Portland.
  3. The CCG is fully funded through support from pharmaceutical companies.


  1. New member charities are admitted to the coalition on the agreement of the Steering Group.
  2. All members must fulfil the following criteria to be eligible:
    1. Have a key focus on cancer care, treatment or research in England
    2. Have a legal charitable status
    3. Be non-profit
    4. Be independent of governments, political parties and commercial organisations
    5. Not be exclusively funded by one pharmaceutical company
    6. Support and demonstrate a commitment to CCG goals and be prepared to work constructively in collaboration with other CCG members.
  3. Member charities do not have any financial responsibility for the CCG.
  4. Member charities may disseminate CCG materials externally and use them in support of their organisations’ communications with key stakeholders.
  5. While members are under no obligation to undertake a minimum level of activity, they are encouraged to participate in any and all activities that are relevant to their area of work.
  6. By joining the CCG, members agree to have their names and logos included on CCG materials and the website.
  7. Member agreement for CCG materials and statements is assumed unless the member expresses otherwise in writing to the Steering Group.
  8. Member charities are able to revoke their membership at any time in writing to the Steering Group.

Steering Group

  1. The role of the Steering Group is to represent the wider membership in the development and implementation of CCG activities and take decisions on behalf of the coalition as needed.
  2. The Steering Group is invested with this power by the CCG Membership and is obliged to defer to the views of the majority of the members if required to do so.
  3. CCG members elect the Steering Group for a two year term per organisation. There is an election a year with 3 of the seats being contested each year.
  4. Each organisation nominates an individual to represent them on the Steering Group.
  5. There must be no more than one member from each charity on the Steering Group at any one time.
  6. Steering Group membership is by charity rather than individual. Charities should try and ensure consistency in their individual representations in order to meet the obligations of the Steering Group:
    1. The charity representative to the Steering Group cannot delegate their attendance at meetings or responsibilities to the CCG without agreement from the Steering Group.
    2. Steering Group members must attend a minimum of 80% of meetings and CCG activities.
  7. Where an individual leaves an organisation or is no longer able to meet the obligations of the Steering Group the organisation charity must nominate another representative within one month.
  8. Should an organisation leave the Steering Group and/or revoke its membership of the CCG an election must be held within 6 months to replace the Steering Group member.
  9. The Steering Group is responsible for overseeing the use of the CCG Budget and supporting the secretariat to raise funds through relationships with supporters.
  10. The Steering Group is responsible for proposing and monitoring the work plan and supporting the relationship between the CCG, wider membership and supporters.
  11. The Steering Group should offer political and policy expertise to direct the work plan and activities of the CCG.
  12. The Steering Group should regularly review the constitution and amend when necessary with consultation of the membership. This must be done at a maximum every three years.
  13. The Steering Group are responsible for managing the contract with the secretariat and making a recommendation to the membership.


  1. The secretariat is accountable to the CCG membership, as represented by the Steering Group, and to supporting organisations.
  2. The secretariat is responsible for liaising between members, Steering Group and supporting organisations. In this capacity the secretariat will produce and circulate contact reports of meetings, and provide regular updates detailing CCG activities.
  3. The secretariat is responsible for offering strategic counsel and political and policy expertise in order to maximise the impact of the CCG’s activities.
  4. The secretariat is responsible for fundraising on behalf of the CCG, facilitating the Buddy Relationship with Steering Group members and updating the Steering Group on a quarterly basis on the CCG’s income and expenditure.
  5. The secretariat should be reviewed every two years by the Steering Group. The Steering Group has the option to extend the contract for another year if the majority agree. The contract must be retendered at the end of the three years.


  1. The CCG must have a minimum of two supporting organisations at any one time.
  2. Funding for the CCG is generally sought for an annual work programme rather than individual projects. Funding for individual projects must abide by the principles of impartiality set out in this paper.
  3. Supporting organisations’ objectives cannot be in conflict with those of the coalition for example, the CCG would not accept the tobacco industry as a supporting organisation.
  4. Pharmaceutical supporters must ensure that they comply at all times with the ABPI Code of Conduct governing the relationship between patient groups and pharmaceutical companies.
  5. Supporting organisations do not and should not seek to direct or control any aspect of CCG strategy, activities or publications.
  6. Supporters are invited to attend formal meetings with CCG members and are welcome to share their ideas and give feedback for consideration as consulted by the Steering Group.
  7. Supporters will receive copies of CCG documents for information. This will be at the same time as the CCG charity members and may be on occasion under embargo but they will not have the right to edit.
  8. Publications from the CCG and the website will include a declaration of support and list the names of the supporters. This is to maintain the CCG’s transparency about how it is funded.
  9. Supporters are encouraged to contact their Steering Group buddy or the Secretariat to input their suggestions for the group and to discuss fundraising.

Agreement of a yearly activity plan

  1. The Secretariat will, on an annual basis, lead the production of a plan outlining the activities of the CCG for the year ahead. It should be informed by members’ input.
  2. A draft version of the plan should be signed-off by the Steering Group before being shared with members for comments. It is the responsibility of the Secretariat to collate any feedback received.
  3. Supporters are to be informed about the draft plans before the Steering Group signs off on them. This is to aid decision-making on future funding.
  4. The Secretariat will then produce a final version of the plan. It will be signed-off by the Steering Group, and shared with members and supporters for their information.
  5. The Secretariat has a duty to monitor progress made with regards to implementing the plan. In the interests of transparency, a short update should be provided to members and supporters on a quarterly basis.

Types of activity the CCG may undertake

  1. As described in above section, a yearly activity plan will outline the exact activities that the CCG will undertake in the year ahead. However, in general terms, these may include:
  1. Meetings and events with key stakeholders
  2. The publication of position statements and reports
  3. Responding to consultations
  4. Setting up Task & Finish Groups (see below for more information)
  5. Joint campaigning activities
  6. Any other activity that the Steering Group agrees will further the aims and objectives of the CCG

Task & Finish Groups

  1. Task & Finish Groups may be set up when there is a desire to focus on any specific issue that falls outside of the CCG’s annual plan. When five or more members express an interest in doing so, a Task & Finish Group can be set up on the agreement of the Steering Group.
  2. A Steering Group member must be sought to sponsor the Task and Finish Group. Their role is to support those members and ensure that the Steering Group is updated on progress.
  3. The Secretariat should notify members and supporters when a Task & Finish Group is set up. An invitation to join should be extended to members.
  4. It is appreciated that Task & Finish Groups are likely to be diverse in terms of the issues they cover and the outputs they are working towards, meaning that different ways of working will be required. However, the following applies in all cases:
  1. Each Task & Finish Group will be chaired by a member of the Steering Group.
  2. Ways of working, clear aims and objectives, and the length of time that the group is going to exist should be agreed at the group’s inception.
  3. The chair is responsible for keeping members and supporters updated. For example, this could include sharing meeting minutes, and draft position statements and consultation responses.
  4. New members may join the Task & Finish Group at the group’s discretion.

Last updated: January 2018

It is supported by 8 companies:

  • Amgen
  • Bayer
  • Boehringer Ingelheim
  • Bristol-Myers Squibb
  • Lilly
  • Novartis
  • Pfizer
  • Roche